GSK Lupus Summit: Lupus Bloggers Unite...with patient friendly GSK Big Pharma!



#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus 


About two weeks ago, I had the pleasure of attending a lupus blogger summit in downtown Philadelphia. Hosted by GlaxoSmithKline, the makers of Benlysta, the #GSK Summit brought together a handful of lupus bloggers from across the nation, in order to share and discuss the strides GSK is making in the land of lupus, create awareness, and to meet others who are equally as passionate about advocating for lupus! 

To say that the event was inspiring is an understatement. It was thrilling to be surrounded by patient advocates, like myself, who had so much to say about lupus and living well. And to have been invited by GSK, a pharma company, to talk about lupus, what's being done, and what can be done in the future to improve the lives of lupus patients was beyond fabulous!

We had a chance to meet and talk with the key players of GSK's immunology team, learn about the results of a recent SLE survey, conducted by Gfk (Growth for Knowledge), and flip through the materials GSK has created to assist patients in managing their disease. Their website, USinLupus, deserves a visit. I've blogged about their site and materials before, but their newest checklists and reminders can assist anyone heading to their next doctor's appointment. Check them out here and here.

Below you'll find the infographic showing the results of the SLE survey mentioned above. One of the primary findings of the survey was that SLE patients have difficulty describing and communicating their symptoms to their physicians, which results in a gap between physician understanding of the full impact the disease has on patients. I'd say we patients find difficulty for many reasons, several of which I mention in my book and in my lupus workshop, Listen Up, Doc! It's not easy, and the fact that GSK acted upon these findings, and created materials to try and bridge that gap is commendable.





Another take away from the summit was the introduction to the other lupus bloggers. Many of us have had the opportunity to virtually "connect", but to be seated around a conference room table together, united in purpose, was something really special. Be sure to check out the blogs of the lupus folks who attended, and check them out on twitter. Some tweet more than blog, others blog more than tweet. Either way, they have some great things to say about lupus!

#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus

And the blogs;
Lupus Adventurer, Lupus Colorado BlogLupus ChickGetting Closer to Myself, Tiffany and Lupus, LA Lupus Lady, LuckFupus, Shanelle Gabriel, and Queen of Spain.

Many thanks goes to #GSKSummit for hosting. The GSK folks who participated were top notch - so enthusiastic, gracious, and hospitable. I couldn't have asked for a more open and honest group of people with whom to share an afternoon! Please note that GSK provided for my travel and expenses in conjunction with the summit, but this post is all me!

Comments

Christine Lee said…
Hey Sara, I wanted to ask from one lupus patient to another, if you watch your intake of Omega 3 and antioxidants? I've been using this food supplement for about 6 months now and it has been amazing - my energy level is up and I rarely have to stop and take naps anymore. It's called Kyani and you can find it at www.kyanisale.com . I hope you check out the literature that is available and consider incorporating it into your lifestyle!
Sara Gorman said…
Thanks for the recommendation. I'll look into it and run it by my doctor. Sounds promising!
Carie said…
Great post, Sara. Totally agree with your sentiments about GSK and the entire crew. You've all helped me so much online ... it was so cool to meet you in person.

Here's a post I wrote about the summit: http://lupuscolorado.org/i-went-to-the-gsk-lupus-summit-and-all-i-got-was-a-new-lupus-community-wait-what/
Sara Gorman said…
Thanks, Carie! I've been recommending your blog to EVERYONE...it's so good! So nice to meet u.